COVID-19 FAQ

What does COVID-19 mean for the Diamond Blackfan Anemia community?

Frequently Asked Questions

A few key points:

1 – Coronavirus disease or COVID-19 is caused by a novel coronavirus (meaning that this virus has never infected humans before and there is no immunity in the general population). Coronaviruses are a large family of viruses that are common in people and many different species of animals. Rarely, animal coronaviruses can infect people and then spread among people such as with the Middle Eastern Respiratory Syndrome (MERS-CoV) and the Severe Acute Respiratory Syndrome (SARS-CoV), and now with this new virus, named SARS-CoV-2 that is commonly known as COVID-19; the name used in the following questions/answers.

2 – The answers provide general knowledge about the novel coronavirus disease called COVID19. The information comes from our growing clinical experience and from reliablesources such as the CDC and NIH and others.

3 – If you have questions about possible symptoms of COVID-19 infection that you or your child are experiencing, please speak to your or your child’s provider.

4 – Reported COVID-19 have ranged from mild symptoms to severe illness and death in the general population.

5 – Symptoms may appear 2-14 days after exposure and usually include fever, cough, shortness of breath and muscle aches. Some patients may be without any symptoms (asymptomatic) and some will have worsening symptoms and require hospitalization.

6 – Do not take any medications on your own to prevent or treat COVID-19. There are no medications that are proven to work to prevent COVID-19 infection (prophylactically) at this time and the medical community is still learning what the best regimen is to treat COVID-19.

7 – Until there are full testing capabilities and a vaccine there may be another wave of infection. For this reason the DBAR would like to gather information on any DBA patient infected with COVID-19 so we can accumulate a list of symptoms, risk factors and outcomes. If you or your child with DBA have been diagnosed with COVID-19, please complete the COVID-19 survey or call/email the DBAR.

Which DBA patients are considered to be at higher risk than the general public with respect to contracting and succumbing to COVID-19?

In the general population, older age, obesity, high blood pressure, diabetes, pre-existing lung disease, compromised immune system and/or cardiac disease have been risk factors for getting very sick with COVID-19. Newer data are indicating that African Americans may also have an increased risk. We do not have any data for DBA patients so this question cannot be answered precisely at this time. With regards to contracting the virus those patients on high-dose steroids and patients with known immune deficiency may be at higher risk. We also theorize that patients with high iron burdens, in particular with cardiac disease from iron overload or with diabetes from iron overload, as well as older patients may be at higher risk of COVID-19 complications.
Is a DBA patient on low dose prednisone with a normal WBC count at greater risk than a person without DBA? Is there a maintenance dose of steroids below which they are no longer considered immunocompromised?

The physicians in DBA community considers the maximal dose of steroids should be less than 0.5 mg/kg/day or 1 mg/kg every other day. This dose is not considered immunosuppressive and, in fact, at these doses, patients can receive live virus vaccines without increased risk.
If a DBA patient is in remission, would he/she still be considered at a higher risk because he/she has an underlying condition?"

In general DBA patients are not immune suppressed so most patients may be considered at regular risk. However, this depends on the dose of steroids if the patient is steroid dependent. It also depends on the severity of the iron overload if the patient is transfusion dependent, and the patient’s overall health. This includes whether the patient has endocrinologic problems such as diabetes or decreased thyroid function, or decreased heart function. Each patient has their own individual risk profile that needs to be taken into consideration.
Does being iron overloaded or chelating put a DBA patient at higher risk?

Chelation does not appear to put a patient at any risk for viral infection. However, iron overload can put you at risk for certain bacterial infections and can put you at high risk for endocrine disorders like diabetes, low thyroid hormone, a poor stress response, heart failure, and heart rhythm abnormalities. Individual risk profiles must be taken into consideration.
Many DBA patients never had T-cell or IGG studies done. If a patient hasn’t had those tests, should it be assumed that he/she is immunocompromised just to be safe?"

No – DBA is, in general, NOT an immune suppressive disease. Patients with a few RP mutations may have immune suppression. A history of infections should be considered in assessing an individual risk profile. If the patient is on low steroid dose or has low iron burden, then they are not in general significantly immunocompromised. Some DBA patients may havelow white blood cell (WBC) counts and low neutrophil counts (also called neutropenia). Most patients with DBA do not have severe clinical neutropenia. This means that usually if the patient develops a bacterial infection the WBC and neutrophil count will increase or will functionally be able to fight the bacterial infection. Also having neutropenia does not make a person immunocompromised. Your immune system mostly comes from your lymphocytes. Our body uses lymphocytes to fight viruses so the neutropenia in some DBA patients should not make patients more susceptible to COVID-19.

Which DBA patients are considered to be at higher risk than the general public with respect to contracting and succumbing to COVID-19?

In the general population, older age, obesity, high blood pressure, diabetes, pre-existing lung disease, compromised immune system and/or cardiac disease have been risk factors for getting very sick with COVID-19. Newer data are indicating that African Americans may also have an increased risk. We do not have any data for DBA patients so this question cannot be answered precisely at this time. With regards to contracting the virus those patients on high-dose steroids and patients with known immune deficiency may be at higher risk. We also theorize that patients with high iron burdens, in particular with cardiac disease from iron overload or with diabetes from iron overload, as well as older patients may be at higher risk of COVID-19 complications.
Is a DBA patient on low dose prednisone with a normal WBC count at greater risk than a person without DBA? Is there a maintenance dose of steroids below which they are no longer considered immunocompromised?

The physicians in DBA community considers the maximal dose of steroids should be less than 0.5 mg/kg/day or 1 mg/kg every other day. This dose is not considered immunosuppressive and, in fact, at these doses, patients can receive live virus vaccines without increased risk.
If a DBA patient is in remission, would he/she still be considered at a higher risk because he/she has an underlying condition?"

In general DBA patients are not immune suppressed so most patients may be considered at regular risk. However, this depends on the dose of steroids if the patient is steroid dependent. It also depends on the severity of the iron overload if the patient is transfusion dependent, and the patient’s overall health. This includes whether the patient has endocrinologic problems such as diabetes or decreased thyroid function, or decreased heart function. Each patient has their own individual risk profile that needs to be taken into consideration.
Does being iron overloaded or chelating put a DBA patient at higher risk?

Chelation does not appear to put a patient at any risk for viral infection. However, iron overload can put you at risk for certain bacterial infections and can put you at high risk for endocrine disorders like diabetes, low thyroid hormone, a poor stress response, heart failure, and heart rhythm abnormalities. Individual risk profiles must be taken into consideration.
Many DBA patients never had T-cell or IGG studies done. If a patient hasn’t had those tests, should it be assumed that he/she is immunocompromised just to be safe?"

No – DBA is, in general, NOT an immune suppressive disease. Patients with a few RP mutations may have immune suppression. A history of infections should be considered in assessing an individual risk profile. If the patient is on low steroid dose or has low iron burden, then they are not in general significantly immunocompromised. Some DBA patients may havelow white blood cell (WBC) counts and low neutrophil counts (also called neutropenia). Most patients with DBA do not have severe clinical neutropenia. This means that usually if the patient develops a bacterial infection the WBC and neutrophil count will increase or will functionally be able to fight the bacterial infection. Also having neutropenia does not make a person immunocompromised. Your immune system mostly comes from your lymphocytes. Our body uses lymphocytes to fight viruses so the neutropenia in some DBA patients should not make patients more susceptible to COVID-19.

Which DBA patients are considered to be at higher risk than the general public with respect to contracting and succumbing to COVID-19?

In the general population, older age, obesity, high blood pressure, diabetes, pre-existing lung disease, compromised immune system and/or cardiac disease have been risk factors for getting very sick with COVID-19. Newer data are indicating that African Americans may also have an increased risk. We do not have any data for DBA patients so this question cannot be answered precisely at this time. With regards to contracting the virus those patients on high-dose steroids and patients with known immune deficiency may be at higher risk. We also theorize that patients with high iron burdens, in particular with cardiac disease from iron overload or with diabetes from iron overload, as well as older patients may be at higher risk of COVID-19 complications.
Is a DBA patient on low dose prednisone with a normal WBC count at greater risk than a person without DBA? Is there a maintenance dose of steroids below which they are no longer considered immunocompromised?

The physicians in DBA community considers the maximal dose of steroids should be less than 0.5 mg/kg/day or 1 mg/kg every other day. This dose is not considered immunosuppressive and, in fact, at these doses, patients can receive live virus vaccines without increased risk.
If a DBA patient is in remission, would he/she still be considered at a higher risk because he/she has an underlying condition?"

In general DBA patients are not immune suppressed so most patients may be considered at regular risk. However, this depends on the dose of steroids if the patient is steroid dependent. It also depends on the severity of the iron overload if the patient is transfusion dependent, and the patient’s overall health. This includes whether the patient has endocrinologic problems such as diabetes or decreased thyroid function, or decreased heart function. Each patient has their own individual risk profile that needs to be taken into consideration.
Does being iron overloaded or chelating put a DBA patient at higher risk?

Chelation does not appear to put a patient at any risk for viral infection. However, iron overload can put you at risk for certain bacterial infections and can put you at high risk for endocrine disorders like diabetes, low thyroid hormone, a poor stress response, heart failure, and heart rhythm abnormalities. Individual risk profiles must be taken into consideration.
Many DBA patients never had T-cell or IGG studies done. If a patient hasn’t had those tests, should it be assumed that he/she is immunocompromised just to be safe?"

No – DBA is, in general, NOT an immune suppressive disease. Patients with a few RP mutations may have immune suppression. A history of infections should be considered in assessing an individual risk profile. If the patient is on low steroid dose or has low iron burden, then they are not in general significantly immunocompromised. Some DBA patients may havelow white blood cell (WBC) counts and low neutrophil counts (also called neutropenia). Most patients with DBA do not have severe clinical neutropenia. This means that usually if the patient develops a bacterial infection the WBC and neutrophil count will increase or will functionally be able to fight the bacterial infection. Also having neutropenia does not make a person immunocompromised. Your immune system mostly comes from your lymphocytes. Our body uses lymphocytes to fight viruses so the neutropenia in some DBA patients should not make patients more susceptible to COVID-19.

Which DBA patients are considered to be at higher risk than the general public with respect to contracting and succumbing to COVID-19?

In the general population, older age, obesity, high blood pressure, diabetes, pre-existing lung disease, compromised immune system and/or cardiac disease have been risk factors for getting very sick with COVID-19. Newer data are indicating that African Americans may also have an increased risk. We do not have any data for DBA patients so this question cannot be answered precisely at this time. With regards to contracting the virus those patients on high-dose steroids and patients with known immune deficiency may be at higher risk. We also theorize that patients with high iron burdens, in particular with cardiac disease from iron overload or with diabetes from iron overload, as well as older patients may be at higher risk of COVID-19 complications.
Is a DBA patient on low dose prednisone with a normal WBC count at greater risk than a person without DBA? Is there a maintenance dose of steroids below which they are no longer considered immunocompromised?

The physicians in DBA community considers the maximal dose of steroids should be less than 0.5 mg/kg/day or 1 mg/kg every other day. This dose is not considered immunosuppressive and, in fact, at these doses, patients can receive live virus vaccines without increased risk.
If a DBA patient is in remission, would he/she still be considered at a higher risk because he/she has an underlying condition?"

In general DBA patients are not immune suppressed so most patients may be considered at regular risk. However, this depends on the dose of steroids if the patient is steroid dependent. It also depends on the severity of the iron overload if the patient is transfusion dependent, and the patient’s overall health. This includes whether the patient has endocrinologic problems such as diabetes or decreased thyroid function, or decreased heart function. Each patient has their own individual risk profile that needs to be taken into consideration.
Does being iron overloaded or chelating put a DBA patient at higher risk?

Chelation does not appear to put a patient at any risk for viral infection. However, iron overload can put you at risk for certain bacterial infections and can put you at high risk for endocrine disorders like diabetes, low thyroid hormone, a poor stress response, heart failure, and heart rhythm abnormalities. Individual risk profiles must be taken into consideration.
Many DBA patients never had T-cell or IGG studies done. If a patient hasn’t had those tests, should it be assumed that he/she is immunocompromised just to be safe?"

No – DBA is, in general, NOT an immune suppressive disease. Patients with a few RP mutations may have immune suppression. A history of infections should be considered in assessing an individual risk profile. If the patient is on low steroid dose or has low iron burden, then they are not in general significantly immunocompromised. Some DBA patients may havelow white blood cell (WBC) counts and low neutrophil counts (also called neutropenia). Most patients with DBA do not have severe clinical neutropenia. This means that usually if the patient develops a bacterial infection the WBC and neutrophil count will increase or will functionally be able to fight the bacterial infection. Also having neutropenia does not make a person immunocompromised. Your immune system mostly comes from your lymphocytes. Our body uses lymphocytes to fight viruses so the neutropenia in some DBA patients should not make patients more susceptible to COVID-19.

Which DBA patients are considered to be at higher risk than the general public with respect to contracting and succumbing to COVID-19?

In the general population, older age, obesity, high blood pressure, diabetes, pre-existing lung disease, compromised immune system and/or cardiac disease have been risk factors for getting very sick with COVID-19. Newer data are indicating that African Americans may also have an increased risk. We do not have any data for DBA patients so this question cannot be answered precisely at this time. With regards to contracting the virus those patients on high-dose steroids and patients with known immune deficiency may be at higher risk. We also theorize that patients with high iron burdens, in particular with cardiac disease from iron overload or with diabetes from iron overload, as well as older patients may be at higher risk of COVID-19 complications.
Is a DBA patient on low dose prednisone with a normal WBC count at greater risk than a person without DBA? Is there a maintenance dose of steroids below which they are no longer considered immunocompromised?

The physicians in DBA community considers the maximal dose of steroids should be less than 0.5 mg/kg/day or 1 mg/kg every other day. This dose is not considered immunosuppressive and, in fact, at these doses, patients can receive live virus vaccines without increased risk.
If a DBA patient is in remission, would he/she still be considered at a higher risk because he/she has an underlying condition?"

In general DBA patients are not immune suppressed so most patients may be considered at regular risk. However, this depends on the dose of steroids if the patient is steroid dependent. It also depends on the severity of the iron overload if the patient is transfusion dependent, and the patient’s overall health. This includes whether the patient has endocrinologic problems such as diabetes or decreased thyroid function, or decreased heart function. Each patient has their own individual risk profile that needs to be taken into consideration.
Does being iron overloaded or chelating put a DBA patient at higher risk?

Chelation does not appear to put a patient at any risk for viral infection. However, iron overload can put you at risk for certain bacterial infections and can put you at high risk for endocrine disorders like diabetes, low thyroid hormone, a poor stress response, heart failure, and heart rhythm abnormalities. Individual risk profiles must be taken into consideration.
Many DBA patients never had T-cell or IGG studies done. If a patient hasn’t had those tests, should it be assumed that he/she is immunocompromised just to be safe?"

No – DBA is, in general, NOT an immune suppressive disease. Patients with a few RP mutations may have immune suppression. A history of infections should be considered in assessing an individual risk profile. If the patient is on low steroid dose or has low iron burden, then they are not in general significantly immunocompromised. Some DBA patients may havelow white blood cell (WBC) counts and low neutrophil counts (also called neutropenia). Most patients with DBA do not have severe clinical neutropenia. This means that usually if the patient develops a bacterial infection the WBC and neutrophil count will increase or will functionally be able to fight the bacterial infection. Also having neutropenia does not make a person immunocompromised. Your immune system mostly comes from your lymphocytes. Our body uses lymphocytes to fight viruses so the neutropenia in some DBA patients should not make patients more susceptible to COVID-19.

Which DBA patients are considered to be at higher risk than the general public with respect to contracting and succumbing to COVID-19?

In the general population, older age, obesity, high blood pressure, diabetes, pre-existing lung disease, compromised immune system and/or cardiac disease have been risk factors for getting very sick with COVID-19. Newer data are indicating that African Americans may also have an increased risk. We do not have any data for DBA patients so this question cannot be answered precisely at this time. With regards to contracting the virus those patients on high-dose steroids and patients with known immune deficiency may be at higher risk. We also theorize that patients with high iron burdens, in particular with cardiac disease from iron overload or with diabetes from iron overload, as well as older patients may be at higher risk of COVID-19 complications.
Is a DBA patient on low dose prednisone with a normal WBC count at greater risk than a person without DBA? Is there a maintenance dose of steroids below which they are no longer considered immunocompromised?

The physicians in DBA community considers the maximal dose of steroids should be less than 0.5 mg/kg/day or 1 mg/kg every other day. This dose is not considered immunosuppressive and, in fact, at these doses, patients can receive live virus vaccines without increased risk.
If a DBA patient is in remission, would he/she still be considered at a higher risk because he/she has an underlying condition?"

In general DBA patients are not immune suppressed so most patients may be considered at regular risk. However, this depends on the dose of steroids if the patient is steroid dependent. It also depends on the severity of the iron overload if the patient is transfusion dependent, and the patient’s overall health. This includes whether the patient has endocrinologic problems such as diabetes or decreased thyroid function, or decreased heart function. Each patient has their own individual risk profile that needs to be taken into consideration.
Does being iron overloaded or chelating put a DBA patient at higher risk?

Chelation does not appear to put a patient at any risk for viral infection. However, iron overload can put you at risk for certain bacterial infections and can put you at high risk for endocrine disorders like diabetes, low thyroid hormone, a poor stress response, heart failure, and heart rhythm abnormalities. Individual risk profiles must be taken into consideration.
Many DBA patients never had T-cell or IGG studies done. If a patient hasn’t had those tests, should it be assumed that he/she is immunocompromised just to be safe?"

No – DBA is, in general, NOT an immune suppressive disease. Patients with a few RP mutations may have immune suppression. A history of infections should be considered in assessing an individual risk profile. If the patient is on low steroid dose or has low iron burden, then they are not in general significantly immunocompromised. Some DBA patients may havelow white blood cell (WBC) counts and low neutrophil counts (also called neutropenia). Most patients with DBA do not have severe clinical neutropenia. This means that usually if the patient develops a bacterial infection the WBC and neutrophil count will increase or will functionally be able to fight the bacterial infection. Also having neutropenia does not make a person immunocompromised. Your immune system mostly comes from your lymphocytes. Our body uses lymphocytes to fight viruses so the neutropenia in some DBA patients should not make patients more susceptible to COVID-19.